Biologic #8: Starting Simponi

I’m about to start another new biologic medication, monthly injections of Simponi, which will be my eighth biologic since I first began taking them in 2002. It’s hard to believe that I’ve been on these powerful drugs for that long and that I’m on #8 now. And two of them, Remicade and Humira, I’ve taken twice over the years (and can’t take again). I’m also finding it hard to believe that I’m getting so close to running out of biologic options. This is a stressful, worrisome, and scary spot to be in because biologic drugs have been the only effective forms of treatment (other than prednisone) for me since being diagnosed with RA 20 years ago. I hope so much that Simponi will finally be the medication that works and for a good length of time. My RA has been unstable and I’ve been in a frustrating state of “limbo” for way too long now–about five years, I think.

A snag with the medication?

Despite my hopes about Simponi, there has already been a big “snag” with this medication. I’ve had to delay starting it by two months due to illness and taking antibiotics twice for a stubborn upper respiratory and throat infection that dragged on for weeks this winter. Then not long after finally finishing the last antibiotic, a strange thick and nagging cough popped up that I’ve been trying to wait out, wishing for it to just go away on its own. Unfortunately, it doesn’t look like it will be fading away by itself anytime soon.

Infections caused delay

So! Here’s an update on the cough and Simponi situation: I saw my primary doctor a few days ago and even though she thinks this loose and nasty-tasting cough is virus-related, she wanted to put me on an antibiotic again because of my compromised immune system. The last two rounds of antibiotics this winter were Augmentin but this third time it’s my old friend the Z-pack (azithromycin). I really, really hope that THIS will now be the end of the sickness and antibiotics for a while. I need a break!

Looking back during all of these years of taking biologics, I realize that I’ve been very fortunate that things have gone mostly smoothly with all of them. With the exception of Rituxan (which is the last one I’ve taken), I haven’t had any reactions, interactions, or side effects. I feel incredibly lucky for this because I know that many people have suffered from biologic reactions and side effects which have prevented them from being able to take certain drugs, and have therefore inhibited or limited their treatment choices.

The reaction/interaction I had from Rituxan wasn’t extremely severe for me, really. I had a mild and irritating (itchy throat) allergic reaction each time during the infusion which went away once I was given additional Benadryl and steroids. However, a reaction that always happened the evenings of my Rituxan infusions was that I developed a pretty excruciating headache that would last at least a couple of days. This head pain was difficult to deal with but I rationalized that I could put up with it every six months if the drug could successfully control my RA. Unfortunately, Rituxan was not the effective “wonder drug” treatment that my rheumatologist and I were hoping for, which leads me to trying Simponi next.

During this long and unpredictable biologic journey, what might Simponi soon bring to me? My hope, just as it is every single time I’m about to begin a new treatment, is that this will finally be the drug to get me back on track. And by “on track,” I mean and hope for my RA to become stable and under control again like it was for several years in the past–and good enough to finally take a long and much-needed break from my daily dose of prednisone. I also hope that my good-luck record of not having side effects or problems from biologic medications will continue with #8. That is, if I can ever get off antibiotics long enough to get started!

The RA “road” is a long, erratic, and winding one that never ends; the “biologic road” can feel similarly long and full of twists and turns. Whatever happens with my RA, I know that I can handle it and I’m so grateful to have a rheumatologist who continues to travel that road along with me, helping to navigate biologic treatment decisions with much patience, support, and kindness.

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Comments

I’m so sorry that you’ve had to deal with RA for so long and I completely understand the search for that “wonder drug”. I’m praying the Simponi will be the one that “works” well and long w/o any bad side effects for you. I haven’t tried 8 biologics, but have tried 7 totals drugs including 2 biologics, going back to MTX 3 times, and Plaquenil twice, & not including the sporadic Prednisone tapers and a few times daily small doses. One of the biologics was actually helping me very much, not enough for my rheumy to justify not adding MTX injections back to it, but I was happy with the results. It’s the last one I was on, Actemra and the ONLY reason I had to discontinue was bc my insurance took it off their formulary and stopped paying the almost $4000 a month for it. So now I’ve started Xeljanz but my rheumy is not confident that it’s going to help. She only had me start taking it “just in case” it might help. And bc I declared that if I wasn’t able to take the Actemra then the horrible side effects from the MTX wasn’t worth the small amount that it would help when taken alone. So now on to the Xeljanz and rheumy says that if it’s not helping in 6 weeks, we’re starting biologic infusions but Idk which one yet. It sounds like you have a good handle on dealing with this RA and meds roller coaster and remain positive and hopeful. I pray you get the break you need from all of it, sickness, antibiotics, RA instability, med search.

Angela, this story makes me feel like I’m not alone on this journey…I have had RA for 25 years. I am not even 30 years of age and have RA, Ulcerative Colitis, & Fibromyalgia. I am a full time Nurse & struggle to find a therapy to keep me in ny field since I am so young. I have tried the many therapies at different intervals throughout my life including daily, DMARDS, Methotrexate, Prednisone, NSAIDS & biologics (to include Humira twice and Enbrel twice). I have been on Simponi for 4 months & it does lower the immune system so the URI’s are common. It manages me to the point where I am not on Prednisone daily & I’m sure would work better if I was willing to go on MTX in conjunction, but as I have not yet had children I will hold off on taking that again for now.
Your story & the others who comment make me feel like I’m not stranded in this confusing & fickle disease territory alone. There really is no magic biologic that is the end all be all for everyone’s disease course. It is scary when you begin to run out of options, but maybe in a few months Simponi will manage your symptoms so that ADL’s can be done with more ease. Best of luck to you!

Starting Orencia infusions tomorrow,, tried two other R.A> drugs first but the side affects where to much to handle digestively. There have been many delays trying to get on an R.A. drug,, hoping this one will work well at least for a little while…

Angela: Good luck with Simponi. I liked it when I was on the injectable and have had good results since I’ve been on the infused version for more than a year. I don’t remember if you’re also on MTX, but if you are, just please be careful with antibiotics. They can interact with MTX in ways that aren’t good.

I scan relate to your story, Angela. I’ve been through all the TNF inhibitors; they helped control the spine and joint disease progress but not so much for my scleritis. Was finally started on Rituxan Nov ‘17 and my scleritis cleared. But have since been told by the ocular immunologist that I could never go back to a TNF inhibitor due to high risk of infection. So I recently added MTX injections. And I can feel improvements in joint pain now from that.

20 years? Then I hope you’re 98 years old. Or older. 🙂 I’ve been diagnosed with RA for 3 1/2 years but have had it much longer; the test just kept coming back negative.

I turned 65 this year and had to get off Enbrel even though it was working fairly well with no side effects. Why? I couldn’t afford the over $1,000 co-pay with Medicare even though I purchased the best supplement and prescription plan they offered. I’ve been off that for months now, though, because I can’t start my next biologic (Cimzia) because I’ve had a stage four staph infection since 2-3 weeks after stopping Enbrel. I just finished a super strong antibiotic Rifampin and now go back to Bactrim. My stomach couldn’t tolerate both at the same time. My re-tests keep coming back positive. I don’t know how I got this or when it’ll decide to leave so I wonder how much my RA is progressing in the meantime. I can tell more joints are getting involved. But what’s a person to do?

Pamela: I, too, am on Medicare (with a supplement). What they don’t tell you is that while the injected/oral biologics are covered by your Part D plan (and therefore can be beyond your financial reach), infused biologics are generally covered by your Part A&B plans and your supplement. I get my infusions at $0 copay. You might talk to our doctor about the infused biologics. It’s a weird situation because I can’t afford the injectable Simponi, but Medicare pays 100% for the infused version — and it’s the same medication. Here’s an article I wrote on the subject: https://rheumatoidarthritis.net/living/how-you-receive-your-treatment-affects-you-financially/